Some people are comfortable with their appearance and may find a wig unnecessary. Others choose to wear wigs to improve self-image and increase self-confidence in social situations. The decision to wear a wig is, and should be, a personal choice. A child should not be forced to wear a wig. Providing the option to wear…
The NFED Doesn't Need You!
Who needs volunteers? Not the NFED. We can do without volunteers! No need to ask for a helping hand, our staff can do it all. Why create a strong Volunteer base? Volunteers are overrated, a nuisance, and a royal pain. Today is a celebration of mischief and misbehavior. It has become tradition on the first…
What A 10-Year Old Girl With HED Wants Her Dentists to Know
The following is a speech delivered by 10-year old Allison at a Dental Pathology Class in the Dental Hygienist Program at Des Moines Area Community College. She and her mother, Jenny, presented at the class for Ectodermal Dysplasias Awareness Month. Hi everyone, my name is Allison. I am a 4th grader in Iowa. My parents tell me that…
15 Reasons to Attend Family Conference
I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started. Tour St. Louis: Did you know St. Louis has cheese you can get nowhere else? Refresh and Recharge: Take a few days off from your busy schedule and relax and…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
Who Could Say "No" to Mary Kaye Richter?
By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
The Best He Can Be
By Gina Quintanar It’s been almost 16 years since my son Alex was diagnosed with ectodermal dysplasia. He was about four months old when I took him with me to a dentist appointment. The dental assistant was playing with him and asked if I had ever noticed that he had no body hair. I said that I…